Florinef

One of the worst complications of the first three years of Lyme Disease was incredibly low blood pressure. It made my life miserable. I was nauseated and dizzy every time I stood up. I was tired and weak from that on top of the tired and weak I felt when lying down. I was always thirsty and craving salt. I got a positive result on a tilt table test in less than 30 seconds.

My cardiologist had a fit when I refused to take any drugs to stabilize my blood pressure in a normal range (like 90/60 mmHg). I wore non-medical compression socks all the time, which helped an insignificant amount. I drank salt water. None of my home remedies did much good.

After 3 years and 3 different doctors badgering me, I finally broke down and started taking florinef (fludorcortisone). Not many doctors run into people with long term low blood pressure, but apparently extended periods of hypotension can take a toll on the body, the heart, the kidneys, the other organs and the nervous system (brain).

So one doctor read me the riot act and I started taking florinef, .1mg per day. That was plenty. It gave me insomnia for two weeks. Then my body reached a new homeostasis, with a normal blood pressure. It didn’t happen overnight. But when it did happen, my life got a lot better.

I no longer spent every day until 2 or 3pm lying flat on my back. I wasn’t constantly nauseated. (The nausea from low blood pressure is a somewhat different sensation than what I get from my stomach’s unhappy reaction to food.) I stopped feeling light-headed and dizzy.

But more things happened over time. My skin stopped being so thin, as though increased circulation made my skin start moving back towards its normal, less dry and papery state. I had some energy for at least part of each day. I could concentrate better. It was the beginning of starting to feel stronger. I was pleased.

My main concern about florinef was that it would suppress my immune system allowing the Lyme and other tick-borne infections to grow out of control. That didn’t happen, at least not at first. I was on so many antibiotics and an anti-fungal at the time that my infection load and symptoms slowly diminished. So I was okay.

But the information stayed in the back of my mind.

For the past several months, I’ve been occasionally concerned about the chest rash and the urinary hesitation. More recently, I’ve noticed cloudy urine every morning upon waking rather than once or twice a week. Those symptoms just didn’t make me upset because they weren’t terribly painful. Little did I realize that florinef would not only make me more susceptible to systemic fungal infections, but it would mask the symptoms so that I wouldn’t realize how serious they are.

Now that I’m paying proper attention to them and got to talk to my doctor, we have a plan. First, I’ve started on an anti-fungal, oral ketoconozole (and stop the topical use on my chest). That is required no matter what. I’ve got to get the systemic fungal infections under control. Then we discussed whether I still need to be on florinef. There’s only one way to find out. I’m going to start tapering tomorrow. I know that the first few days or a week can be pretty rough. If it’s really bad, I might wait a week to start, while I deal with whatever side effects show up from the anti-fungal drug.

Things are complicated. Every time I notice something improve, I notice something else slipping away. I guess this is a good thing to tackle. My goal is to eventually get off all the medications I’ve been on and go back to being healthy again.

Coiling

Even though I should separate out all the changes to my routine, I want to try coiling some of my joints for Lyme. I’m picking the ones that were most painful yesterday when the Herx began.

I was tired and achy this morning. No night sweat to report. Itching on my chest overnight. Cloudy urine in the morning. I was in bed for a long time and resting on my back for quite a bit of the morning.

I’ve had a headache today. It got a lot worse this afternoon. The welchol did the trick, along with a nap.

This evening, I’ve got joint pain again, which is the driving factor in the Lyme coiling session. I also have some stomach pain, more like heartburn.

From one of the Lyme Herxes, I’ve had Lyme-smelling urine all day.

Again, not too bad for symptoms today, given my standards, but not well enough to get much accomplished. I did, however, discover that I was interested in knitting and worked on one of my two unfinished projects.